Category Archives: Newsletter 2016 October

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PAE President Joop Van Griensven

Dear reader,

Thank you for reading this newsletter, it is a great information exchange between the PAE and all our members. This information exchange can help you in your policy development and in PAE’s policy making.

You will read about the developments of the written declaration of the Brain, Mind and Pain interest group, and also about another relevant declaration for people with chronic pain. You will read about success at a national level involving Ministers, researchers, healthcare professionals, patients rehabilitation centres and so on. Examples which may help you. You will read about successful activities across Europe for people with chronic pain which shows a great willingness to raise awareness on this subject.

Dear readers, you will be glad to see that PAE is still moving forward and the politicians are getting more and more involved. Now it is time to show to our European politicians your involvement, your commitment. In this newsletter you find tools to help the written declaration to get past in the European parliament. We want you to pass that information on to your own members and get them involved in pushing the MEPs to sign that written declaration.

We are moving in to the period that the days are getting shorter and more time will be spent in house. It is also a period where our members are experiencing more problems. So it is good to show them that people are thinking about them and are trying to improve their situation. So by sharing this you are helping your own members also.

I wish you much pleasure reading this newsletter and hope you will find ideas to help you develop your policy.

ACCES TO EMPLOYMENT FOR THOSE AFFECTED BY NEUROLOGICAL DISORDERS AND CHRONIC PAIN CONDITIONS

This is the title of the Written Declaration which PAE together with EFNA within the Brain, Mind and Pain interest group have been working on for the past months. The text of the Written Declaration is to be found on the dedicated website.

If approved, The Written Declaration will be a very valuable document to use at local, national and European level, for example, in:

Advocating for the implementation of employment rights for those affected by chronic pain conditions

Raising awareness of the stigma and discrimination faced by those affected by chronic pain at work

Ensuring relevant EU legislation on access to employment is applied at the national level

Highlighting the existence of EU funds to improve accessibility to the workplace for those who wish to regain or remain in employment

We are pleased to have 22 MEPs signed up as co-authors of this Written Declaration. However, once the declaration opens for signing on 24th October, 2016, we will need to encourage a minimum of 376 MEPs to sign to show their support within three months of this launch in order to have it adopted!

This where we need your help, your commitment and your contribution: we need you to inform your members about this initiative and ask them to contact your MEPs asking them to sign this Declaration. To help you with this:

We have prepared a template e-mail which you can translate into your own language.

We urge you to ask to add a personal reason why you want the MEPs to sign.

We have prepared a list of the contact details of the MEPs by country.

You can find them by going to the website

And anyone who is reading this who is not a member of a PAE, you may of course do this also. We would appreciate this very much.

Please keep in mind the MEPs are there to be the voice of the people of Europe. We all have voted them into that position. Use your right to contact them and ask them to sign and provide better options for people with chronic pain.

We will come back to you on this because this is only the beginning. This is going to be a three month operation in which we will pressure the MEPs as much as possible, in a polite way.

On the same website as you can find the addresses and the template e-mail you also can see a list of MEPs who have signed already. This list will be updated every week. So please, before you send an e-mail or reminder, check that list to see if the MEP has already signed!

We will also reach out to the MEPs by social media, Twitter and Facebook. We will be tweeting about that from the @BrainMindPain twitter account. So give us a follow, retweet our posts and convey our messages to your MEPs.

Please let us know at euaffairs@efna.net when you get a positive reply from your MEP so we can follow up.

PAE News

De week van de Pijn

From September 26 till October 1 “Pijn Samen”(Pain Together) a coalition of more as 50 organisations amongst patient associations, healthcare organisations, healthcare service providers and healthcare professionals organised “De week van de Pijn” (Week of the Pain). This resulted in a lot of publicity Radio, TV (a special TV show for children about chronic pain), papers and magazines.

One of the major outcome of this initiative, which took a period of three years of preparation, was beside the awareness aspect that stakeholders in the chronic pain field have signed a health deal.

PAE members were involved as full partner in developing and signing this deal.

From this place we want to congratulate them with this result.

This deal, which aims for sensible, efficient and outstanding pain care delivery to chronic pain patients, shows that it is possible to come to an agreement with the policymakers. It takes courage, determination and a good and solid policy supported by stakeholders. PAE followed this development and is talking with the organisers on how we best use this result in the European policy.

For this whole project a documentary has been made which follows 6 patients in their daily activities from the period of December 31, 2014 till the summer of 2016. How they deal with their conditions on a daily base. A very recognizable documentary.

The patients are a child with dystrophy – CRPS, a young woman with a complex regional pain syndrome, a middle age man with post operative pain, a middle aged woman with fibromyalgia, a young woman with Scoliosis – back problems – Skyphose and an elderly lady with cancer – Lupus- Rheumatic – and COPD.

For an impression of the closing congress of 28/29 September by following this link you may watch a short video.

Follow this link to see the press release and the full text of the health deal (available only in Dutch).

Member News

ISAL Foundation

The sixth annual event Hundred Cities against Pain organized by Fondazione ISAL was held on Saturday, 1st October 2016.

135 cities in Italy and around Europe took part in the event which has received the Medal of the Italian President of the Republic as institutional recognition. The aim of the Day is to sensitize and inform people about pain, to recognize chronic pain as a preventable and treatable disease, support health care efforts to prevent and manage chronic pain, promote fundraising for research, facilitate the development of specialist education, and involve media in pain fighting.

Each year, individuals, patients, doctors, associations and institutional agencies join the celebration of the International Day by organizing their own events in cities or hospitals, supporting the initiative through website and social networks, participating in the web

#zeropain16 campaign.

The event received the patronage of the main Italian political institutions as well as of the main international organizations working on pain: PAE (Pain Alliance Europe), MEP Interest Group on Brain, Mind and Pain and EFIC (European Federation of IASP Chapters).

In Italy about 13 million people suffer with chronic pain. According to the outcome of a survey by Fondazione ISAL for the 2015 event, it has been shown that even if the majority of people recognize chronic pain as a disease in its own right, information on pain therapies and pain centers is very narrow and many sufferers have no guidance about where they could be referred in order to receive adequate treatment.

Fondazione ISAL works towards the recognition of chronic pain as a disease, and to help sufferers.

The Professional Health Association in Kosovo, PHA – organises together with other partner associations like EFIC and IASP “The 6th International Conference for Pain Treatment”

The Conference will cover different topics about pain management, while main topic will be “Joint Pain Treatment”. Through this, PHA join the IASP and EFIC campaign “Global Year Against Pain in the Joints”.
The event will be held in Touristic Complex “Sharri” in Prevalle of Prizren and Mariano Votta, Director of Active Citizenship Network, will participate as panelist.

Member News

Active Citizenship Network

The annual event for experts in the field on chronic pain is organized by the European Multidisciplinary Network in Pain Research and Education (EMNIPRE) between 14-15 October in Menorca Island (Spain).

Member News

Fibromyalgia Association of Sweden

On the 7-9th of September we attended “Future Specialist Doctors”, Sweden’s biggest congress for future specialists. This is an important forum were we can spread information on fibromyalgia in order to raise awareness of the condition. This year our new folder “Describe Your Pain” was very much appreciated. Many general practitioners stopped by our exhibition stand to talk to us, and we had several good conversations. Many doctors felt powerless in dealing with FM patients, and wanted to know what they could do for our patient group.
We also encouraged doctors to recommend their patients to join a local fibromyalgia association. The psychological burden of dealing and living with fibromyalgia is often relieved when you meet others that are in the same situation.

PAE News

Myeloma Euronet Romania

Novartis – Neuropathic Pain Patient Advisory Board

Viorica Cursaru, PAE board member, attended the Neuropathic Pain Patient Advisory Board organized by Novartis in Zurich on 6 September 2016. The discussions were focused on the overall impact which Neuropathic Chronic Pain has on patients’ lives , the currently available Neuropathic Pain treatment options and factors that might influence a patient’s decision to participate in a clinical trial. The meeting was also attended by 3 other members of PAE, Liisa Mikkonen, Vice President, Marian Nicholson and Mariano Votta.

Member News

Fibromyalgia Association of Sweden

Pilot Study on the Effects of Beetroot Juice on Fibromyalgia Symptoms

Together with one of our local associations, Medical Doctor (M.D.) Olle Haglund has conducted a pilot study regarding the effects of beetroot juice on fibromyalgia symptoms. Dr. Haglund’s theory is that fibromyalgia interrupts the body’s production of nitric oxide, and that symptoms may be relieved by adding this to your diet. An efficient way of doing this is to drink raw juice of beetroot. The study used raw juice of beetroot mixed with either pomegranate or lingonberry (cowberry). The participants were divided into two groups, and assigned to drink either one of the juices. After drinking 0, 75 dl of the juice morning and evening daily for 2 months, both groups experienced reduced pain, and increased energy. Both groups also demonstrated reductions in the amount of free radicals. Other notable effects that is worth mentioning; reduction of the proteins AGE (Advanced Glycation end Product), reduced inflammation in the blood, reduced vascular stiffness, and lowered blood pressure, both systolic and diastolic.
The juice used in the study was provided by the juice manufacturer WellNOx.

Member News

Fibromyalgia Association of Sweden

LivsPlats Sverige – Policy Arena for Preventive Health-care

On the 22-23rd of August we attended LivsPlats Sverige, a policy arena for preventive health-care. Several seminars and panel debates brought up different topics within this area, e.g. how health prevention should be financed, the importance of investing in digitization within the health care sector, and which factors affect a person’s health condition.
LivsPlats Sverige ended with the presentation of a list containing 30 proposals for political measures from a health policy perspective.